Born too soon, twin sisters lavished with love in neonatal ICU

Amber Butler holds her twin daughters Lila, left, and Cora in the neonatal intensive-care unit at St. Paul's Hospital. The baby girls are among the nearly 300,000 babies born prematurely in B.C. each year.Jenelle Schneider
/ PNG

Amber Butler holds her twin daughters Lila, left, and Cora in the neonatal intensive-care unit at St. Paul's Hospital. The sisters weigh barely 4 1/2 pounds each due to being born premature.Jenelle Schneider
/ PNG

Amid beeping medical machines, Amber Butler presses her tiny babies to her skin and breathes in. Her twin girls, born prematurely at St. Paul’s just days before, are fast asleep in the neonatal intensive-care unit, wrapped in their mother’s arms.

Each of her forearms is tattooed with a script: “Health” and “Happiness,” they read. The words curl around the sisters like a blessing.

Cora and Lila, deep in dreams on their mother’s chest, are among the nearly 30,000 babies — eight per cent of more than 371,000 across the country — born prematurely (before 37 weeks) in B.C. each year. These are the babies who so often require specialized neonatal intensive care.

The sisters weigh barely 4½ pounds each and, due to their size, the fact they were born at less than 34 weeks’ gestation and have a touch of jaundice, they will spend their first days of life curled together under the watchful eyes of neonatal nurses and fall asleep to the sound of beeping monitors.

“They need to watch them until they can maintain their own body heat and feed on their own,” explains their mother, an artist from Squamish.

“I think it’s the hardest thing about having premature babies,” Butler says of the need for NICU care, “but we were prepared for that.”

It’s one of the few things she and her husband, Derek Kyle, could prepare for. The discovery during an exam at five weeks along that they were expecting two babies came as a shock. Then, Butler’s pregnancy became rocky: she was constantly sick and exhausted. Toward the end, she required bedrest as a result of kidney and liver strain, extreme pain, a bad case of edema (swelling) and the need for catheterization. At 32 weeks she started leaking amniotic fluid, culminating in a rough, fast labour lasting less than 3½ hours about a week-and-a-half later.

“I was kind of beyond tears,” recalled the 32-year-old, first-time mother. “It was too intense. They are precious. They are the two most important things to focus on.”

And because of the care and advice of St. Paul’s neonatal nurses, Butler is free to let her worries go and simply lavish love on them.

“They’ve been great here,” she says of the help they’ve received. “Everyone checks on you even if they’re busy. They just care.”

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In the nine-bed St. Paul’s NICU, nurses care for babies up to eight weeks premature with the aid of a dozen or so isolettes and stabilettes and monitors — machines that cost as much as a luxury car. The unit sees between 250 and 300 babies per year, who stay for an average of 10 days at an average cost of $759 a day.

“These babies might have some breathing difficulties and might need some help with oxygen, or they might need an IV with some fluids, or they might have to be put into an incubator to keep them warm ... or they may be jaundiced,” explains Liz Hennessey, the hospital’s NICU clinical nurse leader and nurse

educator.

“It’s mostly breathing issues,” continues Hennessey, who has more than 30 years’ experience as a neonatal nurse. “If they are premature, then their lungs are premature” due to lack of surfactant, a fluid that enables lung function.

To protect these babies’ fragile health, the unit is secured behind two doors, one pass-protected, and has a mandatory handwashing station.

“These infants are more immune-compromised, so hand-washing and hand-rubbing [with alcohol sanitizer] are No. 1 for us,” Hennessey stresses. “We are very strict.”

But they are also thoughtful.

Babies can stay in the NICU for months, depending on their condition, sometimes being kept long after their mothers are discharged. Their parents can avail themselves of a special room, the Varshney Lounge, when they need to sleep but don’t want to leave the hospital.

There is also a quiet room for mothers to pump breast milk and another hotel-like suite for parents to room-in with their babies overnight on their own as a trial run before the family goes home.

The consensus on the ward is that NICU services are getting more frequent use due to an increase in twin births at the hospital, because multiples are as a general rule born pre-term.

“We never used to have that,” he says, citing rising maternal age and consequent use of in-vitro fertilization as factors.

But while St. Paul’s delivers many twins – 31 pairs in 2011-12 alone, with three sets born and another on the way during the week The Province spent in the ward earlier this month – triplets and other multiples are rarely seen.

That’s because the Level 2 NICU at St. Paul’s is only approved for babies of 32 weeks’ gestation or older. Most triplets or larger sets of multiples are either born well before that or need advanced care that a Level 2 unit cannot provide.

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Back in the NICU, just before Cora and Lila are discharged to Lion’s Gate Hospital’s NICU so their parents can be closer to home, their father carefully readies his new little girls. They are so small, he could cradle one in each hand.

“I was kind of speechless,” he says of the moment he first laid eyes on his daughters. “My first thought was I couldn’t believe that they were in there.”

But now that they are out here, the new father faces a new set of challenges.

Kyle undresses Cora gently, taking off her pink-striped sleepers and lifting her doll-sized legs to fasten another napkin-sized diaper. She doesn’t appreciate it, so she pees on him. He laughs. NICU or not, babies are babies.

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